United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

EC has renamed her clinic
Paediatric Specialist Fatigue Service

So, she can now ignore the NICE GDL for ME/CFS.

From the experience of other families, she has been the driver of BPS for paediatric ME and training on FII and safeguarding.

 

That isn't quite the issue. I have no idea whether she believes anything or not. But I know that she was brought up in a sceptical scientific culture where you do not go around saying you believe this or that. Things have now got to a stage where White et al are saying we do not care what the evidence says we are going to dredge up every argument we can think of to support our beliefs. I think Crawley may have the nous to opt out of that.

 

I've just looked this up and think this probably deserves its own thread. And there is also probably a related one where someone mentioned recently that apparently funding is easier to come by if you set up a generic fatigue/PPS service than ME/CFS service - which is basically if so a massive undermining of/diversion of the guidelines going on. Because there is no Nice category for this bit - it is the bit that is supposed to 'be gone'

So whilst we are all having to deal with replying to consultations and this type of nonsense the opposite to what should be happenning might be getting silently funded and advantaged to be set up?

Anyway. I looked at the following page: https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp

Crawley now is talked of as one of the few specialists in Chronic Fatigue

and all through the page it is Chronic Fatigue with the SYndrome removed. No ME/CFS or CFS/ME. Just like King's decided to flout things by saying they didn't treat ME/CFS just CFS/ME.

There are no words on how disgusting an attitude that is to safety of patients or taking their reason for being seriously. It's about them clearly.

I've bolded what is clearly the rhetorical/fallacial device of 'non-sequitur' in order to pretend that ME/CFS is 'long-term disabling fatigue'. Or that claiming a specialism in 'Chronic Fatigue' would make you qualified to treat or see patients with 'ME/CFS'.

In order to bridge the gap of her claiming her research now 'only covers chronic fatigue' - because after all we have an issue with the sample not having PEM - vs I guess still really wanting all those with ME/CFS treated 'as if they have' what she wants to carry on doing?

 

Here is the sidestep from their pages (https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp ) that I guess explains some of this, note as the post above they've decided to change any claims of specialism to chornic fatigue instead of ME/CFS as and where it suits over the wider pages, this is the bit where they refer to Nice (my bolding):

"Evidence Based Treatment
We are committed to offering evidence based treatment. We have studied the revised NICE guidelines published on 29 October 2021. We are pleased to say that our service offers all of the aspects of treatment as recommended in the guidance. We offer holistic assessment and personalised care and support plans, developed together with the young person with ME/CFS and their family or carers. This includes exploring energy management, physical functioning and mobility, education support needs, managing symptoms and flare-ups, and supporting psychological and emotional well-being."

SO are they skirting it by claiming the one bit they need to do is 'offer what Nice says they have to offer' re: 'what it is called'. But then skipping 'the emphasis' of the guideline which is that it shouldn't be anything based on deconditioning or false beliefs and that CBT really isn't for the condition at all but an adjunct if people have additional emotional needs. So that they think they are allowed to then offer what they want on top and that's not banned 'as long as its extra'?

Sorry but the wording smacks of politics - I can imagine the lot of them sat in a room working out how to flout things and word it as if they aren't floutng and ignoring.

So yeah - I can see one reason why they wouldn't want to sign something that would draw Nice's attention to them?

 

I'd also think a thread is worthy here for just looking at the following CBT manual from 2022 which is under their resources for Professionals on their website: https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf

It is a CBT manual and to me makes it clear they are using CBT to treat ME/CFS - and it isn't at all within the spirit of being 'supportive' even if they have used weasel-wording to use that term 'supportive' whilst suggesting sleep hygeine as a technique for managing ME/CFS and mindfulness for pain management.

It's the same old pretend it isn't treatment by pretending the condition is best treated 'as a set of symptoms'. PS they've covered their back for parents by saying 'it's just for professionals' and pushing parents and patients towards CHalder's book instead


Page 9 even has a section on 'informed consent' which I think is a laugh

BUt this then all focuses on things like how the sessions could be fatiguing or emotional. Doesn't touch on any of the 'what's in it' and whether it is actually teaching false beliefs

and yet. Scroll down to pages 10 and 11 where it talks about 'what is ME/CFS' and you get to the 'onset and maintenance of ME/CFS' section, second para of which is below (my bolding):

"Whereas the trigger or onset of ME/CFS can be unclear, we know more about what can keep ME/CFS going. The evidence points towards behavioural maintenance factors (activity patterns, sleep) and cognitive maintenance factors (thoughts and beliefs about fatigue). And this is where we can helpfully apply evidence-based treatments, including CBT, to enable the young person to make changes and work towards recovery from their fatigue. There is no medicine or ‘cure’ for ME/CFS. Instead, treatments use largely behavioural methods to bring about changes and improvements, e.g. starting with regulating sleeping patterns and activity levels. This will be explained later in this manual."

I don't think what I've put in bold is accurate. Certainly not the second part.

Anyway, there is far more to dissect here but to give a flavour of how this is needed. The very next line/para after this quoted is the following:

"Recovery in ME/CFS There is no cure for ME/CFS at present and no pharmacological treatment. However the good news is that recovery rates from ME/CFS in young people are good. A Dutch study looking at recovery found that approximately 85% of young people were recovered (absence of severe fatigue) at 1 year after starting active ME/CFS treatment (internet based CBT for fatigue). This data can be compared to a 27% recovery rate for those who were not in active treatment, after 1 year (see Nijhof, S. L., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L., & van de Putte, E. M. (2012). Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. The Lancet, 379(9824), 1412-1418)."

 

And another spot, from the same webpages (clinic run by Crawley): I've seen this term used before and it seems to be something Chalder is switching to using (I'm guessing hoping it will catch on so that she can claim it isn't 'psychotherapy' or 'treatment')... PsychoEducation

"What is ME/CFS?: Psychoeducation about ME/CFS" is in the CBT manual, page 10 : https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf

There is no reason whatsoever that educating people about the condition needs to be 'psycho' and it is annoying me because there is a term when someone unnecessarily manipulates in order to insert themselves into something for which they are neither needed, nor what they have changed things into in the attempt to pretend a need is helpful

But I think trying to slide in psycho-therapies that breach the guideline's spirit and have (and probably never will) not been tested for harm they do: either psychologically, physically or situationally by trying to re-brand the term and pretend you are offering education on what the condition is whilst doing so to keep training in the false belief stuff is: gaslighting.

And yes, gaslighting is harmful: the term comes from the film Gaslight - it was done to drive someone mad. So whether pretend-inadvertent or just callous-disregard for that being a side-effect gaslighting is an incredibly dangerous thing for someone to do even in normal circumstances, nevermind with vulnerable due to health, situation and being a child etc. Probably worth us expanding on that, given there is probably some evidence on the impacts of gaslighting out there we can cross-compare/marry with where any treatment effectively 'gaslights' in order to start 'proving harm' for certain treatments? Even if those pushing said treatment don't want to monitor for harms.. or re-label it 'psycho-Education' as if that means harms don't need to be monitored (?!)

And is highly relevant to the ongoing issue of 'informed consent' and coercion which I think is topical for ME/CFS in particular, from wikipedia ( https://en.wikipedia.org/wiki/Gaslighting ):

"Gaslighting involves two parties; the "gaslighter", who persistently puts forth a false narrative in order to manipulate, and the "gaslighted", who struggles to maintain their individual autonomy.[16][17] Gaslighting is typically effective only when there is an unequal power dynamic or when the gaslighted has shown respect to the gaslighter.[18]"

the flash-up on autonomy (which I remember was one of the categories on a recent thread from Emerge Australia in relation to treatment of pwme) provides the following in the definition (my bolding): "In developmental psychology and moral, political, and bioethical philosophy, autonomy[note 1] is the capacity to make an informed, uncoerced decision. Autonomous organizations or institutions are independent or self-governing. "

 

Blatantly a 2012 Dutch study into CBT treating kids wasn’t of decent research quality for the condition ‘ME/CFS’ , so whoever wrote this manual should be struck off I think - they’ve chosen to insert that and made false claims and know it given how carefully on the top-level pages they’ve danced around pretending and claiming they are experts only in ‘chronic fatigue’ which of course they aren’t because their research is still crap embarrassing they expected to be paid to do it low quality for that, but at least some of the patients on those studies might have had it.

Where they get off suggesting a study that didn’t even mention PEM can advise professionals treating children with ME/CFS that crap gaslighting CBT isn’t harmful coercion and a safeguarding issue being sold under a lie I don’t know.

And THAT should be the sort of thing the GMC or if not then a new regulator needs putting under Nice for people who lie would strike people off for, particularly where it is children or under the mental health sector or those whose illness affects their energy to defend themselves and where they’ve been stigmatised to weaken their ability to defend against such power discrepancies. Ie the vulnerable.

It’s predation, like if someone was cold-calling people with dementia specifically. in those circumstances as far as I can see to lie - and incompetence and callous-disregard ‘only’ (rather than the just as likely targeting because they are vulnerable and you are more likely to get away with it) to make sure you are accurate should certainly not be an excuse that allows anyone to pretend they ‘had good intentions’, it’s unforgivable - good intentions involve proof you took due care and concern, enforcing and blocking anyone from opening their eyes to harm something could or will cause ie making sure it is any monitored well to me that’s a break from what normal people who cared about whether something didn’t harm would do.